Rare Neurological Disease – Special Needs Funding

I am the proud mother of a beautiful 17-year-old daughter who is the center of my world. At the tender age of 9, my daughter Simone was diagnosed with partial dyslexia, and later, diagnosed with a very rare neurological disease called Charcot Marie Tooth (CMT) and severe lower back scoliosis.

Being a single mother, I was ready to walk this journey with my child and be the pillar of her strength. I did everything to understand this condition in more detail to be fully aware of what we had to face and fight. This disease is classified as a hereditary motor and sensory neuropathy of the peripheral nervous system characterized by progressive loss of muscle tissue and touch/feel sensation across various parts of the body. This mainly starts with the hands and feet and as the nerves degenerate, the loss of the ability to use the affected area/limbs increases. Eventually my daughter will be bound to a wheelchair as the disease progresses.

As a single mother it has been challenging to keep up with the medical bills that Simone desperately requires to ensure she has quality of life. To slow down the wasting away of her muscles and to maintain her mobility, she requires an extensive exercise program that includes , a gym contract, vitamin and homeopathic supplementation (to also assist with fatigue), pain medication, psychology therapy, physio therapy, regular scheduled visits to a specialist neuro biokeneticist (who is responsible for her exercise program).

This program is to be evaluated at set intervals as to monitor her progress/regress), occupational therapy and orthopedic devices, regular schedules appointments with her neurologist which includes x-rays, nerve conduction testing, electromyography testing, as to monitor the progression of the disease.

To ensure my daughters needs are met, I have placed her in a “Special NeedsSchool” as she is not able to manage in a normal mainstream school. The two government remedial schools in our area has a waiting list of 7 years, so we have no choice but to place her at a private remedial school which is extremely expensive. At school she currently requires the use of a scribe to assist with the writing of her exams as well as a person to read out aloud her exam paper as she is now at a stage where she is struggling to write.

Simone is a bright, intelligent young lady with huge dreams of becoming a marine biologist or any other field that will allow her to work with animals, focusing on their protection and care. She is an above-average student with excellent marks. This year at the year-end prize giving she won several awards, amongst which is the “Principle’s Award” for the most all round outstanding student. She has also been made a Prefect for next year.

Last month I was informed that Simone has been denied school attendance to complete her final school year (matric) for next year, 2020. The school is demanding that the arrears in school fees amounting to R104 000 is paid in full before the school commences again in 2020. This notification by the school was served on the 9^th of October 2019.

My ex – husband and I have been in constant communication with the school advising them of our financial situations and difficulty in making regular and full payments. However, what significantly added to the accumulation of arrears is that my ex-husband lost his job and was and still is unable to make any further payments. He is still unemployed to this day. I exhausted all avenues to obtain funds.

Currently I am responsible for the full payment of the school fees as well as the cost of all her therapies and treatments. At this stage I am unable to pay for these therapies and treatments as I have to pay the school fees which I am paying with great difficulty. Besides the arrears, assistance with next year’s school fees amounting to R45, 960.00 will be greatly appreciated. Payment thereof will free me up from this burden and I will be able to focus on payment of her treatments and therapies she so desperately needs.

I am humbly pleading to anyone who reads this article to consider the dire situation I am in. This is my last available avenue to secure funding and ensure that my daughter remains in school and completes her Grade 12. Not being able to complete her matric which is her final year of school will be devastating to her future.

I am more than happy to provide validation for any of the information provided, including the school’s notice for payment. Thank you for taking time to read this plea.